A Wendy’s Cheeseburger, Hepburn on my iPhone, and cancer

 In my heart, I will always be the girl with­out the metal, and you will always be the boy with all his bits.” – Quote from an old friend of mine, on our respec­tive sur­gi­cal experiences

It’s a very sur­real thing to know how you’re going to die.  Most peo­ple my age don’t know what’s going to do them in, ulti­mately.  That type of thing can play havoc with your psy­che.  I should know, since I have a rare, and in my case incur­able, type of cancer.

But let’s pause for a sec­ond so I can explain why I’m writ­ing this before we get too deep into it.  I’m writ­ing this because I have a lot of friends who I don’t always see often, don’t always know what’s going on with me, and often won­der how I’m doing.  I’m also writ­ing because I just lost a good friend to can­cer, and I owe him a voice.  I’m not doing this for acco­lades, plat­i­tudes, or rec­om­men­da­tions that I read a bunch of goat-ball-licking non­sense about pos­i­tive think­ing.  I’m doing this for a lot of rea­sons, but mostly because I need to.

And now we’ll go back to the other thing.  The cancer.

Almost exactly two years ago, on May 5th of 2012, I woke up in immense pain in the area where my appen­dix used to be.  I don’t have it any­more, but I did then, and it hurt like a sono­fabitch.  Doc­tors always say that pain is pain, but if it wakes you up out of a cold hard sleep that’s a really bad thing.

Being the guy that I am, I decided to “take it easy” and work from home that day, think­ing all I really needed was to relax.  After a full morn­ing of pain com­ing in waves, how­ever, in some­thing I can only describe as being as close to labor pains as I ever want to come, my wife drove me to the doc­tor.  That doc­tor was pretty sure I had appen­dici­tis and told me to go over to the hos­pi­tal imme­di­ately.  Ass­hat that I am, I was mak­ing appen­dix jokes on Twit­ter all the way there.

Things improved immensely at the hos­pi­tal, but that was mostly due to the copi­ous amounts of liquid-I-don’t-give-a-fuck they were pump­ing into me.  I don’t think my wife was as relaxed, though we both still thought it was my appen­dix at that point.  Look­ing back, it’s kind of funny what kinds of things seem like a big deal when you really have no idea what’s actu­ally going on.

The first incli­na­tion we had that some­thing was going on besides my appen­dix being a stub­born lit­tle crab-ass (he got his even­tu­ally) was when the doc­tor came in and, doing his very best imi­ta­tion of a very wor­ried doc­tor try­ing not to look wor­ried, told us that he wasn’t sure what he was look­ing at, but if it was what he thought it was he wanted me imme­di­ately admit­ted to the Uni­ver­sity of Wash­ing­ton Med­ical Center.

UWMC is a very pres­ti­gious med­ical school and hos­pi­tal here in the Seat­tle area, and also runs the only level one trauma cen­ter for a multi-state region in the North­west; Har­borview Med­ical Cen­ter.  It is the best known hos­pi­tal in Seat­tle out­side of Seat­tle Grace, which is really just a local news station’s build­ing and a Hol­ly­wood stu­dio set.  But I digress.

As it turned out, UWMC was full that night so the doc­tor had me trans­ferred by ambu­lance to Har­borview.  Now I don’t know about you, but when you go to the hos­pi­tal think­ing you’ve got some rou­tine thing, so rou­tine you’re mak­ing jokes about it, and a cou­ple hours later you’re on a fuck­ing ambu­lance to one of the most seri­ous hos­pi­tals in the coun­try, the night has seri­ously gone off the skids.

The ambu­lance ride was fairly unevent­ful, as was the check-in to the emer­gency room (pro tip: if you ever want to get seen quickly at the local E.R., come in an ambu­lance on a gur­ney).  Except for the ran­dom scream­ing in the curtained-off area to the left, the strapped down and guarded pris­oner directly ahead, the guy hav­ing epilep­tic seizures also across from me, and the home­less dude uri­nat­ing on him­self in the next bed over, it was almost peace­ful.  Again, strong doses of main­lined Dilau­did and Mor­phine have that effect.  Not quite enough to cover what came next, however.

I had, by this point had mul­ti­ple imag­ing runs, exams by vary­ing types of doc­tors, and answered the same ques­tions mul­ti­ple times.  I think every sam­ple of every fluid in me had been taken and sent off to secret gov­ern­ment run death-squad ninja sheep-cloning labs, and the ver­dict on at least the imme­di­ate prob­lem was pro­claimed by a very somber look­ing Aussie Doc­tor.  “You’re going to die” she said, then walked off.

Okay, I made that last part up.  She actu­ally said, “We think you have can­cer” and then went on to explain that they thought I had a very rare type of can­cer called neu­roen­docrine tumor can­cer, or NET.  She said the type I have is often referred to as Car­ci­noid, and tends to be some­what indolent—usually.  Of course I didn’t hear shit after the can­cer bit.  All I heard was that I was going to die, and then there was a buzzing in my ears, my eyes watered up, and I felt my wife squeez­ing my hand.

Fast for­ward through a bunch of imag­ing stud­ies, con­sul­ta­tions with dif­fer­ent doc­tors, and inva­sive tests (colonoscopy any­one?) and I had the humdinger of all humdinger surg­eries, at least in my life: a right hemi-colectomy.  And no, that’s noth­ing to do with shit­ting in a bag, so let’s not go there for all of our sakes.  It’s a surgery, which—in my case—involved sur­geons tak­ing out part of my small intes­tine, illeo­ce­cal valve, appen­dix (bas­tard), and about a third of my large intes­tine.  Then they duct tape it all back together, leav­ing you and your insur­ance a cou­ple hun­dred thou­sand poorer.

In my case they also had to remove a rather large (4cm) can­cer­ous tumor, and a whole bunch (36) of lymph nodes.  Here’s the humdingi­est part: they cut a large ver­ti­cal inci­sion a few inches above and below my belly-button, pulled out all of the intestines, plop­ping them on my chest, then man­u­ally went through all of it just to make sure they found all of any kind of tumors hid­ing there.  I wasn’t awake for it—good for all of you, since I would have live-blogged the whole thing—but I’m told I was out for 10 hours or so.

Since then I’ve had one per­cu­ta­neous radio-frequency abla­tion (RFA) to remove a metasta­tic tumor in my liver, and am about to go in for another one because they found another tumor.  My can­cer is stage IV, which means it’s spread out to remote areas—the liver for sure, at this point—and so these tumors are likely to keep crop­ping up with some fre­quency.  “Dis­tant metas­ta­sis” is the doctor-approved term for that par­tic­u­lar behav­ior, the route-66-like wan­der­ing and then pop­ping up sud­denly for a cheese­burger some­where unex­pected.  At least RFA is kind of cool, though, because they use radio-frequency waves to burn the holy liv­ing baje­sus out of any tumor they find in my liver.  The bad part is it kind of hurts.

The prob­lem with hav­ing can­cer is that peo­ple tend to have an idea what it looks like on a per­son.  I’m sup­posed to look weak and maybe lose my hair.  Or I’m sup­posed to die, and then some­one can have a char­ity walk-a-thon in my name.  If I’m really famous I might get a really, really bad tele­vised con­cert.  In any case, NET can­cer doesn’t always fit that pre­con­ceived notion, often because the thing that makes it so insidious—moving slowly—is the very thing that makes it almost incur­able, and keeps you alive longer.  So you don’t look too bad, all things con­sid­ered, even as your tumor bur­den and surgery famil­iar­ity grows.  Three surg­eries in two years, and I’m just get­ting started.

NET can­cer is largely untreat­able by any­thing other than surgery—the gold stan­dard for any can­cer.  Most can­cer treat­ments involve hav­ing chemo to shrink tumors enough that you can have surgery to get rid of what you can get to.  Rinse and repeat.  NET can­cer that is indo­lent doesn’t respond well to chemo, how­ever, so instead you’re left in a surgery-wait-surgery approach vis-à-vis treat­ment.  You sur­gi­cally remove a tumor, then you wait, then you sur­gi­cally remove the next one.  Even­tu­ally there are two tumors, then five, then twenty.  Even­tu­ally, surgery won’t work.

Am I luck­ier than my friend Clay, who died a cou­ple of weeks ago at the age of 37 from an aggres­sive colon can­cer?  Cer­tainly I am.  I’m alive and he’s not.  He fought can­cer and lost, all at a hyper-fast pace and writ large across his social media chan­nels and the faces of his friends who watched it all hap­pen.  I can’t imag­ine what kind of anx­i­ety he had at the very end, but I drive myself crazy imag­in­ing nonetheless.

Neu­roen­docrine cells are found in many organs in your body.  At a layman’s level, what they do is take input from your ner­vous sys­tem, and based on that they put out dif­fer­ent hor­mones, like, say, Sero­tonin.  As a com­puter guy, I can appre­ci­ate a nice, sim­ple, input/output sys­tem.  And as long as these cells are nor­mal and healthy, that is exactly what you have: a clean, sim­ple, well-functioning sys­tem.  C’mon, no whammies!

On a related note, I’m told by many rep­utable sources that we all have can­cer cells in our bod­ies.  All a can­cer cell is to begin with is a cell that goes all wonky, gets hit in the nog­gin a bit too hard one day and is sud­denly like that weird cousin we all have…the one we only see at hol­i­days and who makes every­one uncom­fort­able, the one we keep the large knives hid­den from.  Nor­mally our immune sys­tems can deal with these lit­tle mal­con­tents by dis­patch­ing lit­tle assas­sins to take them away and beat them to death.  Some­times, how­ever, there are too many of them, or they find a place to hide, and even­tu­ally our body sim­ply can’t deal with them.  Then we have a prob­lem.  Then, we have can­cer.  The type of cell that mutates or goes bad deter­mines the type of can­cer we get.  Liver cell?  Liver can­cer.  Prostate cell?  Prostate can­cer.  The can­cer cells also inherit the behav­iors of the cells they used to be.  Cells that grow quickly become can­cer cells that grow quickly.  That’s one rea­son why some can­cers are more dan­ger­ous than oth­ers.  The adap­tive behav­iors of the cells they used to be works against us in try­ing to treat what they have become.

In my case, the neu­roen­docrine can­cer cells can still take inputs from the ner­vous sys­tem, and still out­put har­mones, but they do it on their own sched­ule, on their own time, in their own quan­ti­ties, and accord­ing to their own voli­tion.  So, ner­vous sys­tem says you need one pint of beer?  Too bad, you get five shots of high-test moon­shine instead, or maybe a steak, or here, just for­get the last five min­utes of what­ever you were doing.  Start­ing to see the pic­ture now?

Peo­ple ask me all the time why I don’t write more often, or con­sis­tently.  Some­times it’s because I have noth­ing to say, but usu­ally it just comes down to the way my brain is func­tion­ing at any given time.  My doc­tors have me on a vari­ety of dif­fer­ent med­i­cines.  Some for depres­sion, some for anx­i­ety, some for other things, and some to coun­ter­act the effects of the other drugs they gave me, all in an attempt to keep the hor­mones in check.  All of that makes it often dif­fi­cult to write with any sort of style, grace, or indeed point.

It also makes it dif­fi­cult to keep it all pulled together at all points of the day.  San­ity, I’m find­ing out, can be a bit of a high-wire act.  Morn­ings are good because I’m focused, excited, and can do my job pretty damned well.  After­noons it takes a bit more effort, but I’m still all good.  I may not laugh at your inane jokes as read­ily, but I can still usu­ally man­age at least an effete, if not totally sin­cere chuckle.  Evenings are a crap­shoot.  Evenings are harder, I think, because I’m more tired and pos­si­bly more removed from a vari­ety of drug effects.  I’m also told that hor­mone releases from my can­cer can be highly var­ied, and pos­si­bly evenings are just their time to party.

I like writ­ing in the evenings.  It’s late as I type this.  At night my brain wan­ders like an under-utilized whore on a busy Fri­day evening.  I don’t have to worry much about for­get­ting what I’m talk­ing about because it’s all right there in the his­tor­i­cal record.  Unfet­tered cre­ativ­ity meets a per­sonal nar­ra­tive and cap­ture device.  Just don’t expect as much out of a conversation.

Talk­ing to peo­ple late at night is tricky.  On a bad night I’ll for­get what I’m say­ing after two sen­tences.  On a good night it might be more.  I’ll wan­der, jump sub­jects, and gen­er­ally segue like nobody you’ve ever met.  The best part though is that I often won’t remem­ber our con­ver­sa­tion at all.  Alco­hol glues it back together a bit, but doesn’t do much for the memory—probably not great for the can­cer either, though my oncol­o­gist doesn’t seem to mind.

Some­times the can­cer I’ve got can progress more rapidly, though mine is not.  Some­times it gets more aggres­sive, or starts more aggres­sive.  Steve Jobs did not have pan­cre­atic can­cer as is so often reported in the media.  He actu­ally had some­thing called a pNET, or pan­cre­atic neu­roen­docrine tumor can­cer.  That type is more aggres­sive than mine is today.  Dave Thomas of Wendy’s fame had NET can­cer, and so did Audrey Hep­burn.  Our can­cer is so rare, how­ever, that those are really the only three famous peo­ple I know who’ve had it.  We don’t have a walk or celebrity spokesper­son.  We have surg­eries, and annoy­ing symp­toms, and more surg­eries.  And we slowly get worse.

I said at the out­set that I know what I’m going to die of.  That’s not entirely accu­rate as I could die of any­thing at all between now and when­ever the can­cer gets me, thereby rob­bing the can­cer of its victory—I often fan­ta­size about being killed by a coconut falling from the clutches of an African Swal­low, for instance.  But bar­ring that, I know that all of these tumors are push­ing chem­i­cals into my body that cause dam­age… chem­i­cals that if left untreated will cause mas­sive heart and liver dam­age.  So we remove them when we find them, and treat them with drugs for all the in-between times.  It’s not a per­fect sys­tem by any means, but I’m still alive after two years, so I’ll take it.  And since this dis­ease leaves me with what doc­tors say could be an “almost nor­mal” lifes­pan, I’ll prob­a­bly have a chance to test my luck in myr­iad dif­fer­ent ways.

Monte Carlo Baby!

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